It never ceases to amaze me the ideas people have about how it all works when you live with a disability. There are certain assumptions folks make that work against any positive change happening any time soon. I find this sad because most people I talk to really do support helping a person with a disability get what he/she needs – but we really aren’t doing that.
For example, in the US, our system falls far short of providing people with disabilities with devices and equipment they may require in order to live independently and be productive (whether for paid or volunteer work). But I often receive comments from people expressing surprise that someone doesn’t have a, b or c that would make things easier. The assumption is that if people just asked there must be a place they could get it. The truth is that there is a long and winding road toward getting equipment – if it even works.
In our country many people with disabilities use grants, family resources and fundraisers to get vital equipment and devices. Insurance doesn’t cover many items which affect transportation, mobility, reading, writing, feeding oneself, dressing oneself, getting in and out of beds, baths, chairs, etc. Vocational rehab in each state differs and ability to get items through agencies varies, leaving many people unable to utilize it.
Because of this, basic everyday functions that require specialized devices or equipment fall on those around us because we lack the ability to afford what we need to do these things independently – not always because we lack the ability to do these things!
And I think that is a hard truth for people to look at because it’s so much easier to just assume that there’s an accessible toy box in the sky for us to go to. It’s also hard for those of us who are affected by this to talk about it.
For example, parents of children with disabilities who need things for their children often apologize to me when they can’t afford items that cost thousands of dollars. This is heartbreaking. People who would be able to manage financially without the huge cost of these items feel inadequate even though they may be working two or three jobs to pay for what their child needs and doing creative workarounds to stay employed. In addition, they are using every agency and resource out there which, by the way, is like a part time job in itself.
And what about parents with disabilities and the issues they face?
As Christmas approaches, my fervent hope is that all of us will pray and work toward solutions for those who still need them to give people with disabilities what they need to experience a decent quality of life.
Copyright 2007 Ruth Harrigan